About Us

4th International Forum, London, 'Ask the Doctor' panel

We are the UK's only charity focusing on support for patients, carers, doctors and nurses involved in the treatment of Waldenström's Macroglobulinemia (WM).
WMUK is a unique not for profit organisation, also a registered charity, developed jointly to bring WM patients and medical professionals
closer together to improve the treatment of WM. It was originally set up to deliver an annual WMUK doctor/ patient forum in London. We
have a medical board of leading doctors treating WM in the UK (see below) together with patient representatives. Many of the doctors are
involved in updating the treatment guidelines for the disease, undertake research and attend wm confrernces. You can join a dedicated doctor forum which meets regularly in London - just send us a message. We also assist WM research in the UK with modest grants and for travel in the case of young researchers.

Apart from providing a point of contact, WMUK is also involved in patient advocacy at UK and EU level. It works closely with the IWMF, based
in Sarasota, Florida and the European WM Network. In common with many other rare diseases, the current economic climate of budget
cuts and reconfiguration of the NHS may mean the small numbers of patients, and relatively expensive and specialised treatment that
WM patients need, may put advanced treatments under threat.

More recently with support from people like you, and that of other bodies such as the IWMF and Pharma we have launched an ambitious funding package-
for the Rory Morrison UK Patient Data Registry, a Biobank at University College Hospital in London (jointly with the IWMF) and sponsorship
of a research fellowship investigating IgM production in WM at Leeds Teaching Hospital under Dr Roger Owen. We have just been accepted
for the GECIP 100,000 genomes project and now fund the collection of samples for DNA analysis, providing 'spit tubes' to take patient samples
for DNA testing.

Treatment is already effectively rationed as far as new chemotherapies are concerned by NICE (the National Institute for Health
and Care Excellence) and by the Cancer Drugs Fund. The QALY (Quality Adjusted Life Year) values each extra year of life provided by chemotherapy.
If the cost exceeds roughly £30,000 it is unlikely that a drug will be approved (but the process is constantly changing,but does not favour
rarer diseases). Many medicines recently turned down relate to blood cancers. A similar process happens at the European level where
the European Medicines Agency (based in London) issues Europe-wide licences for new medicines. In future this may prompt the UK government
to make new medicines more available, depending on BREXIT negotiations.

A problem about rarer diseases is the lack of knowledge amongst GPs who may not have even seen a case in their surgery. From
the point of diagnosis onwards - usually the simple part - the main priority is to get yourself referred to a centre that has a speciality
in Lymphoma or Haematology, and preferably runs a dedicated WM clinic which has access to experts in the side effects that WM and its treatment
produces. This will usually be a large regional or London teaching hospital. If you don’t get treated by a WM expert you may not be offered
the latest treatment and, in extreme cases, be given treatment that may prejudice the outcome of later procedures such as stem cell transplants.
Larger centres also offer more chances of joining in clinical trials of new medicines. We can often signpost a centre near you.

Don't be put off by the possible need to travel a fair distance to get the best treatment - you are worth it!. Everyone is entitled to a second
opinion in the NHS. Effective treatment may involve a partnership between local haematologist and a WM specialist.

OUR PATRON: Broadcaster Charlotte Green, famous for her BBC Radio 4 announcements, ex-colleague of Rory Morrison, now author and Classic FM presenter, together with football results, shipping report and many other broadcasting roles.